MND Musings - This is a record of a chronic illness, Primary Lateral Sclerosis, a Motor Neurone disorder, like a slow MND / ALS. My body may not be very cooperative; in fact it's become as stubborn as a donkey, but I'm not dead yet.

Saturday, 30 July 2016

Fifty years ago today, I was in Istanbul. I remember it clearly because we called in at the consulate there to hear the result of the World Cup Final from Wembley, before crossing the Bosporus to camp on the eastern side.

I was in my teens then. One brother was doing a gap year in Iran. Another was doing post-graduate studies in Jerusalem, and the third was mid-degree at Cambridge. At the end of the war my father, an RAF chaplain, had been posted in Palestine where he worked in the Moral Leadership School based in Jerusalem. During that time he had acquired a unique knowledge of Biblical topography. Among other things in her busy life my mother had been bringing up four boys in the post-war years. My Cambridge brother had the crazy idea for using his long vacation: how about the family in the UK driving overland to Jordan, meeting the other two in Jerusalem, and then returning via Israel and Greece?

There were a number of complications, although none as big as they'd be today. It was mainly a matter of getting all the necessary visas and not letting on that we were visiting Israel (as even then the surrounding Arab countries would not have let us through had they seen an Israeli visa on our passports). It was the year before the Six Day War. There was one big problem. We had the car, a shiny black Consul 375, a roof rack, a tent, a home-made awning which could be attached to the roof rack - but we had zero mechanical know-how between us. However we did have a good family friend, Peter, a post-graduate engineer, who knew more than we did, and although he couldn't afford holiday for the whole trip, he would accompany us on the outward journey. My brother from Iran would take his place on the return leg.

The car stood up to the journey pretty well. I think we broke down first on a German autobahn, then in northern Yugoslavia (as it was), had its exhaust replaced in Ankara (very efficiently) and lastly was driven into a ditch by a friendly local lad while we were walking through Hezekiah's Tunnel in East Jerusalem. In Yugoslavia our breakdown was enlivened by a local boy with a crewcut and big grin - perhaps barely eleven - whose conversation on finding we were English largely consisted of naming all the England football team, "Bobby Charlton (rolling the 'r'), Bobby Moore, Jacky Charlton, Gordon Banks...." He knew them better than us. We had no car radio, but we did discover England had reached the final, and so we made for the consulate on Saturday 30th July 1966, to discover that England had won.

There are many tales to be told of that eventful journey, but talking about it today with the brother who masterminded it we reflected how different, indeed how impossible it would be now. I think we drove through Holland, Germany, Austria, Yugoslavia (now Slovenia, Croatia and Serbia), Bulgaria, Turkey, Syria, Lebanon and Jordan to Jerusalem; and, having crossed to Israel, by boat to Greece, Yugoslavia (now Macedonia, Montenegro, Serbia, Bosnia & Herzegovina, Croatia and Slovenia), Italy, Switzerland and France. Bulgaria I remember as quite militarised, along with the ox carts. My brother was chatted up by a drunk Syrian "prince" when we were camping outside Damascus, our friend had his film confiscated after taking a photo of an Italian WW2 aeroplane in Lebanon and I was ordered out of the car at the Jordanian border in order to see whether my hair was too long. I still wonder if they would have given me a number one on the spot. Apparently I passed. But that was the sum of our difficulties. Oh yes, and we got soaked in Austria, eventually resorting to a hotel in Vienna, the Roter Hahn, who were understandably dubious about these bedraggled individuals dressed for camping rather than sightseeing. In the end they gave us a room. And then on the return journey crossing the Mediterranean rough enough for seasickness my father dubbed our converted coaster ferry, the Black Hole of Calcutta, with so many crammed in cabins and on the deck.

BBC Exodus : Our Journey to Europe

Jane and I have just been watching the BBC's moving trio of programmes called Exodus: Our Journey to Europe. The description read, "In 2015, we gave cameras to some of the people who smuggled themselves into Europe, to record where no-one else can go. The result is a terrifying, intimate, epic portrait of the migration crisis." Many of the places were where we had travelled 50 years ago. Through Europe borders are closed or manned by armed border guards, which to my memory only seriously occurred in the Middle East on our trip. Now central Europe is struggling to cope with the desperate migrants and the fear of terrorism. And of course after the coup Turkey is no longer the relaxed welcoming place we knew. No way would or could we cross Syria, that poor war-shattered country. What a mess we have unleashed! How different from the order of 1966!And our discomforts were less than nothing when we watch the refugees ruthlessly exploited by the people smugglers, loaded into overcrowded inadequate boats to face the Mediterranean, trudging through all weathers for mile after mile, being refused entry to countries, struggling for survival in "The Jungle", fleeced by con men. What has happened to progress, to the optimism of evolution? When the media have not been preoccupied with Brexit and the turmoil of domestic politics, they have used the First World War to fill up spare hours and pages. "The war to end all wars". A hundred years on the world is as violent and war-torn as ever. So today, I'll not be madly celebrating what the BBC, in its customary hyperbolic style, this morning dubbed "the greatest day in British sporting history", but reflecting instead on the folly as well as the goodness of human nature.

Friday, 22 July 2016

This week we celebrated our wedding anniversary. One effect (bonus?) of having a condition like MND is that such occasions take on extra significance. If you have one, you'll know what I mean. As every new day is a gift, so every landmark occasion reached is also a gift. One of the things our local MND Association branch has done for a year or two is send a cheque at New Year to people with MND in the county to spend however they want. It's a lovely gesture, since normally one's preoccupied with the mundane matters of disability.

Emily Watkins (Kingham Plough website)

From the Kingham Plough newsletter

When I received my gift in January, I knew how I wanted to spend it. One of our sons' friend had been involved in filming The Great British Menu and so we had watched it. The chef nearest to us in 2014 was Emily Watkins from The Plough in Kingham, and she won the regional round and in the final week her fish dish was chosen for the war veterans' banquet. As far as one could tell from TV, not only did she cook beautiful food but she also seemed a nice person. One day, I thought, I'd like to take Jane for a meal at her pub.....

What better excuse than a wedding anniversary meal? The whole day exceeded our expectations. It helped that the drive took us through the Cotswolds north of Burford; it helped that the day was sunny; it helped of course that it was our anniversary and we were still in love.

We were shown a table inside near the bar, but decided to sit outside in the sun. We ordered our first course - for me, smoked sea trout "Wellington"; for Jane, home-made coppa with broad bean and radish salad and three times cooked potato wedges. The bread, while we waited, was, I imagine, artisan-baked, delicious. We were surprised and delighted when Emily brought out the smoked sea trout. I'm not a gourmet or a food critic, and I have never come face-to-face with food quite this beautiful.

I won't play the TV critic by analysing the ingredients and flavour combinations, but you can see it - and you'll have to take it from me, it tasted as good as it looked. The Wellington itself had the fish itself at the centre, minced off-cuts (I think), then seared chard leaves and finally the thinnest pastry I've ever come across. It added to my enjoyment when Emily emerged from the kitchen to ask how I'd enjoyed it. She told us it was a new dish. She had had 20 goes at perfecting it - and this was the first time she'd been satisfied enough to serve it to a customer. Wow! I thought. I assured her it was brilliant. Sadly I wasn't with it enough to get a picture of us with her...!

Our puddings - sorry, desserts - were lemon posset with granola (Jane) and strawberry soufflé with clotted cream custard (me). And of course they too were lovely. So we drove home with a warm glow inside and out.

To cap our day we spent the evening with old friends and new friends at our local coffee shop, Cornerstone, for the occasional meeting dubbed Face2Face. We shared food (again!) and music or poetry which meant something to each of us. My choice was Liszt's Les Préludes, which I first heard with Jane at an open-air concert at Kenwood House 44 years ago, intensely romantic and spiritual. Jane chose a song which resonates more with our present situation, Laura Story's Blessings, which asks questions about the mystery of unanswered prayer. She doesn't give definite answers, but keeps asking, "What if...?" To end with, Mary read a version of the Hungarian writer, Útmutató a Léleknek's often quoted/plagiarised parable, Do you believe in mother? And Pete prayed.

Saturday, 16 July 2016

I was at a meeting on Thursday, discussing social media. I happened to say to someone there how hard it was to express our negative thoughts together to God. And then came along a third major atrocity in France within 18 months.

Back at home, I heard that 84 people, including 10 children, had been killed by a man repeatedly driving a lorry into a crowd watching a Bastille Day fire​work display in Nice. At the time of writing, 54 children lie in hospital fighting for their lives. And so-called ISIS gloat over one of their "soldiers" committing an act of such deluded barbarity. How can we tell God how awful it is? How dreadful and demonic? How much we hate it? Are we allowed to? Can we find words that match the moment? Well, I think we may, we should and we can.

Photo: Huffington Post twitter

In the days when psalms were a regular part of daily Anglican worship, I've never once heard the most difficult one sung or said in its entirety. It's Psalm 137. It's one of several laments which come in the book of ​Psalms - the Jewish hymn book. It expresses the most raw pain and anger of any worship song I know.

Here it is:

By the waters of Babylon, there we sat down and wept, when we remembered Zion.On the willows there we hung up our lyres.For there our captors required of us songs,and our tormentors, mirth, saying, “Sing us one of the songs of Zion!” How shall we sing the Lord's song in a foreign land?If I forget you, O Jerusalem, let my right hand forget its skill! Let my tongue stick to the roof of my mouth, if I do not remember you,if I do not set Jerusalem above my highest joy!Remember, O Lord, against the Edomites the day of Jerusalem,how they said, “Lay it bare, lay it bare, down to its foundations!”O daughter of Babylon, doomed to be destroyed, blessed shall he be who repays you with what you have done to us!Blessed shall he be who takes your little ones and dashes them against the rock!

It seems so unChristian, doesn't it? Especially those last lines. And yet... and yet, to be candid, that is the way that we feel in our inner, secret depths. "Give them exactly what they dealt out to us and our loved ones." That's natural justice. ​​​​It's a cry of utmost pain. It's how much it hurts - or it should be. It's appropriate.​ For a time anyway. And if it is​ what we feel, then pretending to God that we don't is pretty pointless. ​​Perhaps it would be good at times like this to share this psalm, even say it together, and then listen to familiar words of Jesus in Matthew 5:

"You have heard that it was said, 'You shall love your neighbour and hate your enemy.'But I say to you, Love your enemies and pray for those who persecute you,so that you may be sons of your Father who is in heaven…"